PCOS Affects 1 In 10 Women: Here's Everything You Need To Know

One of the most common endocrine disorders affecting women of reproductive age today is PCOS, or polycystic ovarian syndrome. This condition has a negative impact on a woman's hormones and can lead to a variety of frustrating and serious health conditions. "Specifically, people with PCOS have abnormally high levels of androgen hormones [like testosterone], which can disrupt the balance of hormones that regulate the menstrual cycle and [can] prevent ovulation," senior scientist Krystal Thomas-White told HuffPost.

Despite how common it is, many women are unfamiliar with PCOS and how it can affect them. The disease is also unpredictable and difficult to understand and diagnose. According to a 2017 study published in the Journal of Clinical Endocrinology & Metabolism, women often experience a two-year delay between noticing symptoms, such as difficulty losing weight and experiencing irregular periods, and receiving an official diagnosis. They also end up seeing more than three healthcare professionals, a journey that causes sadness and frustration and one which can negatively impact an individual's mental health. Educating yourself on the signs of PCOS as well as tips for managing an official diagnosis may help circumvent more serious health conditions down the line.

What exactly is PCOS?

Polycystic ovarian syndrome, also known as PCOS, is both a metabolic and a hormonal disorder that affects as many as 15% of individuals assigned female at birth. "Polycystic ovarian syndrome (PCOS) is a hormonal disorder that affects women and cause[s] irregular periods, high levels of androgens (male hormones) leading to acne, excessive body/facial hair, and polycystic ovaries (enlarged ovaries with small fluid-filled sacs that surround the eggs)," PCOS specialist Anna Arabyan told The Everygirl. Each fluid-filled sac, or cyst, is a follicle containing an immature egg that never triggers ovulation, making it the leading cause of infertility in women.

PCOS is extremely common and yet its exact causes aren't understood. However, not everyone diagnosed with PCOS actually has cysts. Some experience high levels of androgens and cortisol, while others experience chronic inflammation and irregular periods. Many other women experience a combination of these symptoms, which contributes to the difficulty of receiving a proper diagnosis.

How is PCOS diagnosed?

Due to the wide variety of symptoms associated with PCOS, acquiring a diagnosis can be difficult. Each woman's symptoms can present differently. As a result, although millions of women are affected by PCOS and PCOS-related symptoms, roughly 50% go undiagnosed. "Your symptoms can be vague or mimic symptoms of other conditions, so PCOS can go undiagnosed for a while," Jessica Chan, a reproductive endocrinologist and PCOS specialist, shared with Cedars-Sinai. "There's no single test for it, but a physical exam, ultrasound, and blood tests can help diagnose PCOS." Because of this, it can take years and visits to multiple medical professionals before a clear diagnosis is obtained. This lengthy, frustrating process can cause feelings of confusion and powerlessness for women who simply want to figure out what is going on with their bodies.

The Rotterdam criteria is the most widely-used PCOS diagnosis tool. According to this criteria, irregular or non-existent menstrual periods, polycystic ovaries identified via an ultrasound, and hyperandrogenism identified via a blood test are the main symptoms of this disorder. Women must present two of the three to receive an official diagnosis. In addition, a handful of miscellaneous symptoms are generally associated with PCOS as well, including fertility problems, hormonal acne, dark skin patches, skin tags, pelvic pain, and chronic mood disorders.

Genetics may play a role

After receiving a PCOS diagnosis, women often wonder what they did to develop the condition in the first place. Did they eat the wrong foods? Not exercise enough? There is no concrete answer, although it is unlikely that any one choice leads to the development of PCOS. 

Some research supports the theory that PCOS may be the result of genetics. Between 20% and 40% of women who have PCOS have an immediate family member who also has it. "No one would say PCOS is primarily genetic," Lauren Streicher, a clinical professor of obstetrics and gynecology, told Health.com, "but it is fair to say that there does seem to be a genetic component that may be associated with PCOS, but it has not been specifically described and is multifactorial." This multifactorial element means that your environment, exposure to pollution, and lifestyle choices may all play a role in the development of PCOS.

All about adrenal PCOS

Women with PCOS often experience a combination of psychological and physiological stress in their bodies. The internal stress caused by imbalanced hormones, severe dieting and exercise, unhealthy eating habits, poor sleep, and environmental toxins can cause the body's adrenal glands to release more of the stress hormone cortisol. Cortisol serves an important function by regulating blood sugar and blood pressure and managing your body's sleep schedule. It is also a major player in regulating your body's metabolism. However, when cortisol levels are too high, it can have a detrimental effect on just about every system and organ in the form of inflammation, weight gain, poor bone formation, and suppressed reproductive function.

With the increased production of cortisol comes an increase in DHEA-S levels, or androgens. Also known as the male sex hormones, androgens include testosterone. When the body has too much testosterone, it can lead to conditions such as hirsutism, or extra hair growth on the face and body, something many women with PCOS struggle with. Cortisol also signals a need for the release of glucose into the bloodstream for the muscles, a physiological response designed to help us react to stressful, fight-or-flight situations. But in the modern world, most women aren't constantly in life or death situations, so the excess glucose doesn't have anywhere to go. Instead, it forces the body to raise the amount of insulin it's producing. However, in women with PCOS, this increase in insulin may not work the way it should.

What to know about insulin resistant PCOS

Although insulin resistance isn't part of the traditional PCOS criteria, up to 70% of those with PCOS struggle with it. "Insulin resistance and hyperinsulinemia [excess insulin] are hallmarks of PCOS," Laura Hieronymus, American Diabetes Association vice president, shared with EndocrineWeb. "Data show that enlarged fat cells, reduced serum adiponectin, along with central abdominal weight are the strongest predictors for insulin resistance in women with PCOS."

After eating, the pancreas produces the hormone insulin to bring glucose into the body's cells for energy. This also lowers blood sugar. Insulin resistance occurs when the body doesn't effectively use the insulin it produces. Over time, as the body's pancreas pumps out more insulin to compensate for higher blood sugar levels, glucose builds up in the bloodstream, resulting in high blood sugar and excess insulin. If left unchecked, insulin resistance can lead to an increased risk of prediabetes, Type 2 diabetes, and heart disease.

It's possible for women with PCOS to restore their insulin sensitivity. Diet, in addition to moderate exercise, such as walking and yoga, plays a role. "There's a large subset of women with PCOS who will thrive on a low-grain or grain-free food plan – similar to a paleo way of eating," endocrinologist Ula Abed-Alwahab shared with the Cleveland Clinic. "Start with a JERF (Just Eat Real Food) diet consisting of whole, unprocessed, unrefined foods." Some research suggests that eliminating dairy and gluten from your diet can also assist with reversing insulin resistance.

Chronic inflammation is common amongst those with PCOS

As a result of both insulin resistance and oxidative stress, women with PCOS are often prone to chronic, low-grade inflammation throughout their bodies. Normally, inflammation is the body's way of fighting off perceived threats like illness. But chronic inflammation in people with PCOS is triggered when it shouldn't, and it presents itself in a number of ways, including swelling or heat, headaches, and joint pain. "Research shows that people with PCOS show evidence of all-over inflammation, which is associated with heart disease and other illness," clinical dietitian Amanda Stathos told John Hopkins Medicine. "The Mediterranean diet eliminates saturated fats, processed meats, and refined sugar, which makes it a powerful tool to address inflammation ... Substituting whole, unprocessed options for inflammatory items can set the stage for better long-term health."

While no one food or diet is a cure for PCOS-related inflammation, incorporating anti-inflammatory foods such as healthy fats, leafy greens, berries, and omega-3 fatty acids found in fatty fish or supplements into your diet can help. Processed snacks, fried foods, sugary beverages including soda and fruit juice, and refined flour, pasta, white rice, and bread are good to limit or enjoy in moderation. This is because these types of foods have had all of their nutrients and fiber removed. They are digested more quickly than whole foods, leading to spikes in blood sugar that can increase the body's inflammatory response and hunger.

Irregular periods are a common symptom of PCOS

Having an irregular menstrual cycle can have a number of potential causes that may not have anything to do with PCOS. However, irregular periods lasting fewer than 22 days or more than 34 days or skipped periods is often a sign of PCOS. The high levels of both insulin and androgens are likely to blame. "While all women produce small amounts of androgens, those with PCOS have more androgens than normal, which prevent ovulation and make it difficult to have regular menstrual cycles," said Justin Sloane, a physician at Penn Medicine.

Sloane also noted that irregular periods caused by imbalanced hormones are a risk factor for more serious conditions down the line. "Women with PCOS also produce excess estrogen, or female hormones ... long term 'unopposed estrogen' can lead to a build-up of the lining of the uterus which is a major risk factor for uterine cancer." Of course, irregular periods and irregular ovulation also make it much more difficult to get pregnant.

The idea that PCOS and weight go hand-in-hand is a myth

Gradual weight gain is a common side effect of PCOS, affecting roughly half of all women with the condition. Many women discover they have the condition after having a difficult time losing weight despite dieting or exercising regularly. This frustrating process is normally the result of their bodies' inability to process insulin correctly, causing a buildup of glucose in the body and weight gain primarily in the abdomen. If left unchecked, PCOS-related weight gain may lead to an increased struggle with menstrual irregularity and infertility.

However, the idea that all women with PCOS are overweight or that a thin person cannot be diagnosed with PCOS is a myth. "There's a misconception that you have to be the stereotypical overweight woman," certified health coach Amy Medling explained to Everyday Health. The truth is that PCOS does not discriminate based on size, shape, or ethnicity. Aiming for a healthy weight for your body is thought to help balance hormones and may also help regulate your periods, which can be achieved through regular activity and a balanced diet.

The connection between PCOS and mental health

Women with PCOS are at an increased risk for mental health issues including depression, anxiety, and eating disorders. The diagnosis of PCOS itself can easily lead to feelings of frustration and isolation, while the staggering lack of solid information surrounding the condition and the best treatment options can be disheartening at the very least. Many women experience fear of not being able to get pregnant or developing serious health conditions, such as Type 2 diabetes, especially considering PCOS isn't thought to be the end result of specific lifestyle choices. "Firstly, being diagnosed [with PCOS] can lead to feelings of sadness, overwhelm, loneliness, fear of infertility, and low self-worth," Anna Arabyan, physician, PCOS specialist, and hormone coach, explained to The Everygirl. "Secondly, the hormonal imbalances can cause severe PMS-like symptoms, further contributing to low mood."

Therefore, it's extremely important for women with PCOS to put their mental health first. Prioritizing self-care by obtaining proper sleep and managing stress are natural ways to help reduce some of the more distressing PCOS symptoms. "Creative activities such as painting, drawing, writing, and playing music can be therapeutic and reduce stress levels," physicians and WeHeal founders Alona Pulde and Matthew Lederman shared with Green Matters. "Taking a relaxing bath with Epsom salts or essential oils can also help relieve stress and promote relaxation. Try spending time in nature and connecting with the natural world — take a walk, go for a hike, or spend time gardening."

Hair issues and acne are frustrating symptoms of PCOS

The imbalance of hormones that occur alongside PCOS often leads to frustrating physical symptoms including excessive hair growth and acne. Some women notice an increase in dark, coarse hairs on their upper-lip, jaw, back, or chest as the result of an excess in male sex hormones such as testosterone. Conversely, some women experience hair thinning and hair loss as the result of PCOS. This is largely due to the high levels of androgens their bodies are producing. These hormones interfere with the natural growth and shedding schedule by decreasing the amount of time each strand of hair is in the growth phase.

Severe acne is also a major indicator of hormonal imbalances caused by PCOS, especially in adult women. Thanks to the high levels of androgens, the body produces more oil and decreases cell turnover which can lead to clogged pores and pimples. "These two processes combine to aggravate both comedonal – blackhead type — and inflammatory — red pimple type — acne," professor of dermatology Rachel Reynolds told Insider. This type of acne may appear as large, painful pimples on the jaw, arms, upper back, or chest. Taking hormonal birth control pills, limiting simple carbohydrates and red meat, and applying topical creams including retinoids or salicylic acid may help manage PCOS-related acne flare ups.

Certain medications can treat PCOS symptoms

Depending on how PCOS affects you, some medications may help address certain conditions you experience. For example, people with prediabetes or diabetes as the result of PCOS insulin-resistance often benefit from taking Metformin. This oral prescription drug treats high blood sugar and helps the body use glucose and insulin correctly. Women with hair-growth issues may see long-term benefits when taking androgen blockers such as Propecia or spironolactone, although neither are safe to take during pregnancy. Birth control pills are commonly prescribed to women experiencing irregular or missed periods — one sign of potential fertility issues — and its associated health risks. "Birth control pills are very good for protecting the lining of the uterus in women who are chronically anovulatory," Andrea E. Dunaif, professor of medicine and chief of the Hilda and J. Lester Gabrilove Division of endocrinology, diabetes, and bone disease for the Mount Sinai Health System, told Everyday Health.

Your healthcare professional may recommend certain supplements to help support any unique deficiencies caused by PCOS. Women with insulin resistance may benefit from taking myo-inositol, a supplement that research shows can help balance hormones and regulate ovulation. Vitamin D, zinc, probiotics, fish oil, and magnesium are commonly needed for women with PCOS as well and help balance hormone levels that ultimately benefit a woman's overall health.

Diet and exercise are important for PCOS management

A wealth of evidence suggests that diet and exercise are important for managing PCOS. "I recommend my patients exercise at least 30-40 minutes, 3-4 times a week and stay active on other days," reproductive endocrinologist, PCOS specialist, and assistant professor of obstetrics and gynecology Jessica Chan shared with Cedars-Sinai. "I also suggest a carbohydrate-restricted diet, since women with PCOS don't always process carbohydrates as easily as other women." There is conflicting advice amongst medical experts as to whether high-intensity exercise is helpful or harmful for women with PCOS, but most agree that, above all, it's important to find exercise you enjoy. Walking, practicing yoga, bike riding, dancing, or slow, sustained resistance training are all great ways to get in the necessary amount of activity.

When it comes to food, limiting refined carbohydrates and sugars is generally recommended due to their association with glucose storage and insulin resistance. Swap white rice and bread for whole grain, high-fiber options, and incorporate plenty of fresh fruits and vegetables and minimally-processed foods into your daily diet. It's also important to keep hydrated by drinking water and tea over sugary drinks.

PCOS has no cure but can be managed

A PCOS diagnosis does not automatically mean you'll be permanently infertile or never get your period again. It also does not mean you'll struggle with hormonal acne forever or have to constantly tweeze unwanted dark hair from your chin. Through diet, exercise, appropriate supplementation, and assistance from a medical professional, many PCOS symptoms can be reversed or regulated.

That said, at this point, there is no cure for PCOS. Once you have received a PCOS diagnosis, symptoms can only be managed, and how they are managed from one person to the next may vary drastically. As Andrea E. Dunaif, professor of medicine, informed Everyday Health, "There is no boilerplate treatment."

"It's a lifelong issue," William Catherino, chair of the Research Division, Department of Gynecologic Surgery and Obstetrics, Uniformed Services at Maryland's University of the Health Sciences, told Health.mil. "When young, affected women are concerned about hair growth and acne — androgenic symptoms — then later in their lives, they are concerned about difficulties with pregnancy, then about the cardiovascular effects and insulin resistance; it's very easy to get frustrated and depressed." Regardless of the treatment path you end up on or the way your symptoms present, it's important that anyone with a PCOS diagnosis be proactive in managing their condition to avoid other serious health conditions and stay healthy long term.